Again…thank you…

October 30, 2008 at 6:54 pm

🙂 I truly appreciate all of the support.

Devin was first Dx in Standford, they first said it was ALD…they did every test known. The one blood test you are referring to, to rule out ALD was taken and it was confirmed it is in fact, NOT ALD…however, after 2 years of this, the new dr’s at UCSF just don’t feel his symptoms are that of “textbook” CIDP…he has had 2 EMG’s, 2 MRI’s, 2 LP’s and a muscle biopsy.

He has NO pain…never has. His breathing/swallowing was not effected…even at his lowest point, when his fingers began to curl from paralysis. Walking was not possible yet he had no pain or tingling. Is that normal in CIDP?

As far as his treatments, they tell us, “when he relapses, bring him in”. He then gets 35 grams…(could be kilograms) over the course of 36 hours…well, I think that does more harm than good because of the damage each relapse cause his nerves. It seems that the specialists here (although very kind and open-minded) just don’t have any answers.

My ex wants to try the mayo clinic…but I am wondering what else can really be done…he has had every test known for this…..and others. I’ll call when I can….I appreciate the outreach….I really do.